Still Confused

[neta]

My PT is adamant the the brain is changeable. My neuro says that's baloney--the brain never changes. My PT says retraining the brain is an issue of repetitive exercises done daily: Neuro says, "perhaps. But eventually you will be in a wheelchair." The neuro is of the belief that physical therapy and neuroscience are not a great match. Who is believable? N

[Smallblackdog]

Look up Frenkel Exercises on wikipedia

en.wikipedia.org/wiki/Frenk...

very hard to start from scratch but if you watch and remember how you did something well then repeat it, I reckon it helps to some extent.

[neta in reply to Smallblackdog]

Thanks so much for your advice.

[Cubsfan]

I'm a big believer in PT. I've been out of wheelchair and in Walker now for 8 months. The more PT the stronger my muscles and coordination. A lot of repetitive work though.

[neta in reply to Cubsfan]

I want to believe in it but I don't quite understand how lifting my knee a few times a day, can really help????? But I am very impressed by your story.

[Cubsfan]

Try it 5X/week for 3 months and see if you notice a difference. It works for me. If it causes great pain stop.

[neta in reply to Cubsfan]

I have no pain. I will try it.

[Litty]

Right I THINK there is some truth in it. My memory has always been shockingly bad but nearly every week my husband and I go ballroom dancing. Once I learn a dance it definitely helps me. There is quite a bit of repetition involved.

Recently I have not been so good as usual so I have been searching for new exercises that might help. You have probably seen it but I was looking at the Vasa Concept which is meant to help stroke victims (similar to us). Anyway I will keep you posted if it helps.

Good luck. Exercise of any sort definitely helps physically and mentally : )

[neta in reply to Litty]

Yes, Well I agree to a degree. I now do 2 sets of very different exercises. !) is a traditional gym approach with an emphasis on stretching and aerobics--done while seated and 2) is with a PT. He focuses on balance and balance and balance. But his routine is very different.

[klazien]

The PT exercises probably make your muscle stronger but the damage to your brain is going on.

When one of my sons was a small child with severe dyspraxia the belief of PT’s in both the USA and Europe was that continuous exercises for him would be the cure. They also believed strongly that the brain was changeable. We followed the exercises for years but now when he is 34 years old, the dyspraxia is as bad as ever.

[neta in reply to klazien]

Not sure I know what dyspraxia is. Anyway I think perhaps neuroscience and physical therapy are not ideally suited. PT is good for someone with a broken leg etc. Not sure the brain can really change.

[klazien]

Dyspraxia is a coordination disorder. My son could not and still cannot tie shoelaces, close buttons, use scissors, use a ruler and his writing is worse than that of a first year elementary school pupil. His IQ has always been very high but without the good use of his hands that didnot help and no amount of PT improved his fine motor coordination.

[Iain_100 in reply to klazien]

Ataxia has been a bit of an education for me. It was only through having ataxia that I met one of the kindest people that I have ever met. Both of her sons have dyspraxia.

As for the whole PT V Neuro debate. I reckon both are correct up to a point. Because PTs *might* be correct, and the brain can be "retrained" - I think that it is wrong to make people hopeful that there is some definite miracle cure. It might help. And anything that might help is a step in the right direction.

Anything that raises false hope, the hope that things can and will "get better", is definitely not though.

[neta in reply to klazien]

I see.It sounds pretty tough. I guess my PT might say," Yeah but he can play soccer or play wii."" he's annoyingly upbeat. PT just seems like something to do as your life crashes. I hope I am wrong. N

[neta]

Thanx for your kind answer m'dear. In the meantime Im doing both. N

[neta]

I screwed up my replies, I think. Thanks to "Iain- 1000" and "Klazien"

[angelite]

Hi Neta,

Your neuro sounds like a real glass half empty kind of person - your PT a rather exuberant glass half full !

Neuroplasticity and brain retraining is not a black or white issue - the old grey matter is indeed a grey area. Some people may find improvement, some may not - we are all individuals with differing abilities to reroute different types of damage. Whilst we may not 'win' against a degenerative disease, some of us may at least reach a reasonable compromise and stave off the possibility of extreme disability for as long as we can. I'm definitely going to try for that compromise, every time.

I read an article that said the extent of damage seen on scans of MS patients does not necessarily correlate with the expected level of disability. How can this be explained ? - some of the patients have rerouted new pathways around the damage. So it is possible but not a certainty. Repetition of the correct movement patterns is the best way to help the brain to lay down new pathways of function. Walking aids can help us to normalise our gait patterns and maximise our mobility. Strengthening of muscles gives a good foundation for better control of movement. This is the basis on which all physical therapy is founded. x

[Nigel-2112]

both, neither can or will say when, I look to the PT to delay when I will need a wheelchair, until then I will keep trying to walk with the PT help.

[february]

Dear Neta, I do believe the brain has the capacity to change, as it's neuroplastic! I've read a couple of books by Norman Dopidge, M.D., one called "The Brain's Way Of Healing" and the other "The Brain That Changes Itself", both based on neuroplasicity. Also, my neurologist says there's been successful studies done on rodents where their brains make new neural pathways to commansate for damage pathways. He says repetition is the key and to keep challenging yourself. For instance, I stand at the ledge between my family room and kitchen (so I have something to grab onto incase I start to fall) and bend one knee, balancing on the other foot, for as many seconds as I can. Then I do the other side. I'm up to 30 seconds, whereas when I started (about two years ago) I could hardly do eight seconds! I do other things like the mentioned Frenkel Exercises also (a lot on the floor, no risk of falling...,ha!) over and over again! Keeping muscles strong helps everything, of course! It all takes much time, but is worth it! My best to you..., ;o)

[Davidschafer01]

PT will certainly help strengthen you because repetitive exercise works that way for muscles. Unfortunately the brain is not a muscle. I must agree with your Neuro.

[ConantheLibrarian]

Dear Neta

Personally I don't think it matters that much whether the brain is 'changeable' or not. I have had ataxia for 19 years and I accepted long ago that it would never be cured. Until recently no health professional had ever encouraged me to do physiotherapy and I have always had the impression that if you do PT it might slow the progression of ataxia down a bit but in the end it will make very little difference.

However just recently I have discovered evidence that if you do the right kind of exercises regularly it can significantly improve your ability to move. I have already mentioned in a previous reply my own positive experience of using the advice on Tom Clouse's website walkingwithataxia.com. I normally use a walker and when I started the exercises I was unable to take a single step without holding onto something but 10 weeks later I can now shuffle around my flat without any support. I don't know if you have looked at the website - it might not be your thing - but I noticed above that you said,'I want to believe in it but I don't quite understand how lifting my knee a few times a day, can really help'. I have been doing various kinds of squats every day and by now I do several hundred repetions, including single-leg squats where you lean back against a wall for support. So it's not a case of bending your knee a few times, rather it's a case of really working on strengthening your legs. I have seen physiotherapists in the past and the thing that they always miss out is this need to strengthen your legs. But I can't see the point of doing balancing exercises without also strengthening your legs so that you feel steadier on your feet.

By the way even if you don't think much of walkingwithataxia.com, there is also an article by a physiotherapist mentioned on the website of the US National Ataxia Foundation: ataxia.org/pdf/Coordinative.... The article contains a list of exercises with diagrams. Also at the start in the section 'Overview of the program' it says that over time, 'Patients with ataxia ........lose coordination skills, reaction ability and gait safety to a larger extent than could be explained by the severity of the disease per se.' In other words when ataxians lose their ability to move this isn't just because of their ataxia it's because they have become increasingly inactive and have acquired stiff, unnatural movements and weak muscles. So there are 3 factors which cause ataxians to lose their ability to move: the shrinking of the cerebellum (the ataxia itself), stiff, awkward postures and movements and weak muscles. Although we can do nothing to improve the first factor, we can do exercises to help with the other 2. And who is to say which of the 3 factors is the most important? When some people tell you that ataxians have weak muscles and that your condition will only get worse why should you believe them? How do they actually know? Do these people have ataxia themselves? Are they aware of the latest research into the beneficial effects of physiotherapy? Personally I don't trust this kind of advice and I think it's worth finding a good physiotherapist who is reasonably positive and then giving the exercises a real good go.

Sorry my reply is so long but there is so much I want to say.

[neta]

Thanks 4 those who answered me. Because of the late hour here, I will keep this short. In the meantime, will read and re-read your responses. Feel good. Ignore italics. L,N

[neta]

To all my friends at Ataxia UK who took the time and effort (not easy) to answer my post: You are heroes, all of you. Give yourselves a giant pat on the back. Not because you answered but because your wrote clear, plain, good advice.

Re the PT/Neuro debate re who is right.... I have read and re read your responses. I even checked out Prof Frenkel's ideas. I guess I will try the PT's "ideas" since there is little to lose> It's not like a zillion neuros are banging on my door offering ideas or anything. I guess, I am a pessimist by nature-- not a great asset in this business. Feel good, all of you. N

[foffee11]

The Dr's are just to lazy to look into a book and fi d out about ataxia if they can't treat you with a pill then they say you just have to live with it not true do the exercises before you let them wni n

[neta in reply to foffee11]

I agree, though Im not sure its laziness. I thinks drs. (neurologists) tend to pooh-pooh ataxia because where their energies are truly focused on strokes, folks with ALS, MS and tumors. At the very onset, a neurologist told me its like "getting eyeglasses before your time." He never said words like "wheelchair" and/or "disabled." He was a dr./ neuro at a very famous NYC hospital. Next, a different neurologist never discussed exercise with me, not at all. When I told her that I want to sit always, she aid, "so sit!".... What I find truly galling is the total disregard everyone seems to have 4 this very crushing condition. No one publishes their "findings". I want to win but how?

[neta in reply to foffee11]

I agree, though Im not sure its laziness. I thinks drs. (neurologists) tend to pooh-pooh ataxia because where their energies are truly focused on strokes, folks with ALS, MS and tumors. At the very onset, a neurologist told me its like "getting eyeglasses before your time." He never said words like "wheelchair" and/or "disabled." He was a dr./ neuro at a very famous NYC hospital. Next, a different neurologist never discussed exercise with me, not at all. When I told her that I want to sit always, she aid, "so sit!".... What I find truly galling is the total disregard everyone seems to have 4 this very crushing condition. No one publishes their "findings". I want to win but how?